CBS' 48 HOURS: "Hype or Hope?"

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Note: this is a transcript of the show broadcast by CBS dealing with Nutrivene-D and piracetam, which aired Aug. 21, 1997. Erin Moriarty's credentials are appended below.
Go to List of Past Abstracts Erin Moriarty: What if there was a drug treatment that promises to improve your child's life, a way for your kids to be healthier and happier, maybe even improve their performance at school and help your kids fit in with other children? Wouldn't you want to know about it? Tonight, one mother's relentless struggle to improve her child's life. She's sure she's discovered something unique. But others, including the medical establishment, are not convinced. Is she leading parents down a dangerous path? You decide.
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(Footage of Madison pushing child on swing)
Ms. Dixie Lawrence Tafoya: (Voiceover) I want my child have a totally complete life. She's got a right to grow up and walk down that aisle and hold her own children in her arms if she wants
(Footage of Tafoya at conference)
Moriarty: (Voiceover) What Dixie Lawrence Tafoya wants for adopted daughter Madison...
Ms. Tafoya: Climb in.
{Footage of Madison getting into car seat)
Moriarty: (Voiceover) ...doesn't seem all that unusual... (Footage of Tafoya buckling in Madison)
Ms. Tafoya: OK. Move.
Moriarty: (Voiceover) ...until you realize that Madison was born with Down syndrome.
Ms. Tafoya: And I don't want chronic illness or a foggy brain anything to stand in her way.
(Footage of Tafoya and Madison)
Moriarty: (Voiceover) Children with Down syndrome are born with an extra chromosome that causes the most common form of mental retardation.
Moriarty: The idea of getting a child with Down syndrome -- some people think it's a terrible thing.
Ms. Tafoya: I didn't see that. I was in love with her beyond anything I've ever felt, and it was imperative to me to know everything that I could about her disease. And it is a disease.
(Footage of computer screen)
Moriarty: (Voiceover) What Dixie has done since then...
Ms. Tafoya: I did a lot more research, I called a lot of scientists.
Moriarty: (Voiceover) ...has shaken the world of Down syndrome.
Moriarty: What's your background? You're not a geneticist.
Ms. Tafoya: No.
Moriarty: You're not a doctor.
Ms. Tafoya: No.
(Footage of Tafoya with children)
Moriarty: (Voiceover) She's a housewife...
Ms. Tafoya: You got a boo-boo?
Moriarty: (Voiceover) ...who single-handedly convinced a team doctors and scientists to create a treatment for Down syndrome.
Ms. Tafoya: we studied the blood and urine of over 4,000 patients with Down syndrome.
(Footage of bottle of Nutrivene-D)
Moriarty: (Voiceover) There's Nutrivene-D: a nutritional supplement with vitamins and amino acids...
Ms. Tafoya: Probably means that they'll learn better and develop better because they're happier.
(Footage of bottle of piracetam)
Moriarty: (Voiceover) ...and piracetam.
Ms. Tafoya: It's been around for 30 years without a single side effect.
(Footage of Nootropil; footage of Madison)
Moriarty: (Voiceover) ...a drug Dixie believes will slow, even prevent a child's brain from deteriorating.
Ms. Tafoya: This is piracetam. She gets 800 milligrams.
(Footage of Madison at table; at computer)
Moriarty: (Voiceover) Madison has been taking Nutrivene-D and piracetam for over four years with what Dixie claims are startling results.
Computer Voice: Find something that sparkles and press the button.
Ms. Tafoya: (Voiceover) She's seven years old. She's supposed to be mentally retarded.  Her cognitive abilities and her intellect are as a child without Down syndrome.
(Footage of Madison eating)
Ms. Tafoya: (Voiceover) Very much like a normal seven year-old's.
Moriarty: (Voiceover) Dixie says the treatment has also changed her daughter's appearance.
(Photos of Madison)
Ms. Tafoya: (Pointing to photo) OK. Madison's mouth -- instead of being downturned -- her muscle tone increased to the point where she could have a more normal smile. This little girl's in la-la land and this little girl (pointing to different photo) -- she looks like she's more in tune with her world.
(Photos of Madison on Internet)
Moriarty: (Voiceover) The pictures are evidence enough for thousands of parents Dixie has been able to reach on the Internet...
Ms. Tafoya: This is my email.
(Footage of Tafoya at computer screen)
Moriarty: (Voiceover) ...where Dixie and her team of doctors dispense information about her treatment.
Moriarty: How many e-mails might you get in one day?
Ms. Tafoya: A hundred, easily.
(Footage of computer screen)
Moriarty: (Voiceover) E-mails from parents all over the world.
Ms. Christina Shabet: That's Madison. She looks like a much healthier child here.
Moriarty: (Voiceover) Christina Shabet in Houston, Texas.
(Footage of Shabet with child)
Ms. Shabet: Actually, from the minute I got pregnant, I knew something was wrong.
(Footage of Christina and Alex Shabet)
Moriarty: (Voiceover) When we first met Christina...
Mr. Alex Shabet: We've got a ultrasound at 9:00.
Moriarty: (Voiceover) ...and her husband Alex...
Mr. Shabet: so how does the heart look?
Moriarty: (Voiceover) ...they were awaiting the birth of their second child...
Ultrasound Technician: OK. There's the head.
Moriarty: (Voiceover) ...shortly after learning he has Down syndrome.
Mr. Shabet: I mean. when we heard the news...
Ms. Shabet: It was devastating to us. I mean, you -- you never expected it, you know, especially at my age. You know, I was 27. You know, this happens to women over 35.
Mr. Shabet: No, we're too young. It doesn't happen to people like us.
(Footage of Christina)
Moriarty: (Voiceover) But, in fact, it does.
Mr. Shabet: Let me listen to the baby, OK?
(Footage of Christina during ultrasound; Shabets outside hospital)
Moriarty: (Voiceover) One in every 640 conceptions results Down syndrome. For most women who find out prior to birth, 97 percent of them abort those pregnancies. Not the Shabets.
Mr. Shabet: I think that's the whole problem today. I think people, you know -- if -- if it ain't perfect, get rid of it. I mean. I know -- I think people are missing out on -- on what the real meaning of life is. I mean, life is not perfect.
Ms. Shabet: Yeah. it's probably going to be hard and we're going to have good times and bad times, but I'm always going to love him. He's going to be my baby and there'll always be good times. If I hadn't kept him, I would never have had good times with him.
Moriarty: (Voiceover) Like all parents, the Shabets want what is best for their child...
Ms. Shabet: Dixie really feels, as a mother, that this did something for her child.
(Footage of Nutrivene-D bottle)
Moriarty: (Voiceover) ...and they see Dixie's treatment as a way to get it.
Mr. Shabet: It's a personal decision, and that's what we've decided to do.
Ms. Tafoya: You people that have little new babies and are getting started, you should consider yourselves extremely lucky.
(Footage of Tafoya at seminar)
Moriarty: (Voiceover) There are already more than 5,000 kids on Dixie's therapy.
Ms. Tafoya: Learn all you can about it and then make your own decisions.
Moriarty: (Voiceover) in seminars she gives with her team of experts...
Woman at Seminar: Please help me in welcoming Dixie Lawrence Tafoya.
Moriarty: (Voiceover) . she urges parents to be in treatment as early as possible.
Ms. Tafoya: And we don't know whether what we do is going to extend their lives, but we know darn good and well if we do nothing, we're not going to extend their lives.
(Footage of Shabets with Jake in hospital room)
Ms. Shabet: His mouth is so little, like a bird.
Moriarty: (Voiceover) on April 2nd...
Mr. Shabet: Pretty thick hair. I mean, really -- look back here.
Moriarty: (Voiceover) Christina gave birth to a boy...
Ms. Shabet: Such a tough day you've had.
Moriarty: (Voiceover) ...Jake.
Mr. Shabet: Don't smother him.
Ms. Shabet: I'm not going to smother him.
Moriarty: (Voiceover) And two days later...
(Footage of Shabets at home)
Mr. Shabet: Got to take a quarter of that, divide it in thirds.
(Footage of Shabets giving medicine to Jake)
Moriarty: (Voiceover) ...his parents are following Dixie's advice.
Ms. Shabet: We have to figure out this one.
Mr. Shabet: Oh, I'm not worried about that one.
Ms. Shabet: You need a third of a teaspoon.
Mr. Shabet: Teaspoon or tablespoon?
Ms. Shabet: OK, oh, 30 milligrams per kilograrn...
Mr. Shabet: Is how much?
Ms. Shabet: Thirty per...
Mr. Shabet: Equals 1,600 grams.
Ms. Shabet: Now what's -- 1,600 what?
Moriarty: (Voiceover) Christina and Alex are on their own...
Ms. Shabet: is that too much?
Mr. Shabet: That was enough for three days.
Moriarty: (Voiceover) ...because Jake's pediatrician refused to write a prescription for piracetam.
Ms. Shabet: He doesn't have to because it's not FDA approved.
(Footage of bottle of piracetam)
Moriarty: (Voiceover) so they had to import it themselves from England.
Moriarty:  When your own doctor is telling you he's not going to write a prescription, does that concern you at all?
Ms. Shabet: I mean, I guess maybe a lot or people would say it probably should concern me and probably concern me a great deal but he just feels that it's too experimental.
Mr. Shabet: Do you want to do it or do you want me to do it?
Ms. Shabet: Then why don't you do it because...
(Footage of Christine holding Jake)
Ms. Shabet: It - it is a little bit scary, but I really wouldn't do it if I thought it was going to hurt my baby.
(Footage of Alex feeding Jake)
Mr. Shabet: OK, Bud.
Moriarty: (Voiceover) But the fact is piracetam has never been fully tested on children with Down syndrome.
Ms. Tafoya: (At seminar) Piracetam has been in human use for over 30 years.
Moriarty: (Voiceover) The long-term side effects are unknown.
Ms. Tafoya: I would say it's safer than the Bayer aspirin that you give your baby.
(Footage of Alex with Jake)
Moriarty: (Voiceover) And so far even the test on nutritional supplements have been inconclusive.
Ms. Shabet: Our main theme going into this is to keep him healthy, and if it keeps him healthy, I don't see any problem with it.
Mr. Shabet: The child has Down syndrome. I mean. this is not a cure-all. We just -- we're looking at something that will limit the effects of the Down syndrome. And that's what we think this will do.
(Footage of Moriarty with Tafoya)
Moriarty: Are you worried that you're giving parents false hope?
Ms. Tafoya: No. No.
Moriarty: Are you giving them false hope?
Ms. Tafoya: Oh no, because first of all they will he better because, they'll be healthier. And as far as false hope, those are two words don't belong together in the human language at all.
(Footage of Ms. Shabet)
Ms. Shabet: We're just going to give this a try and see happens.
(Footage of Kiki Ruiz)
Moriarty: (Voiceover) Coming up...
Ms. Kim Ruiz: (Voiceover) Look at her. She's so happy.
Moriarty: (Voiceover) ...a second-grader who's been on the treatment for a year and a half...
Kiki Ruiz: (Reading) "No one has lost a mitten."
Ms. Ruiz: (Voiceover) I would not take her off it.
(Footage of Alex with Jake)
Moriarty: (Voiceover) and an update...
Ms. Shabet: He's a good kid.
(Footage of Alex with Jake)
Moriarty: (Voiceover) on Baby Jake.
Ms. Shabet: we pretty much noticed an immediate difference in his personality.
Moriarty: (Voiceover) But first...
Ms. Cindy Urso: Just very scary to me.
(Footage of Urso, Janice Nelson and Mary Wilt with children)
Moriarty: (Voiceover) ...moms who don't buy into the treatment...
Ms. Tafoya: Parents must be educated.
(Footage of Tafoya; capsules)
Moriarty: (Voiceover) ...nor to Dixie.
Ms. Urso: I myself wouldn't use a drug that has never been tested.
Unidentified Woman: It's too dangerous.

(Commercial Break)


Ms. Tafoya: This will help your child. Learn all you can about it and then make your own decisions. But if will help your child.
(Footage of Wilt and Emily)
Ms. Mary Wilt: Don't hold on because I need to lift you.
Ms. Tafoya: (Voiceover) It's not OK for your child to have Down syndrome. If there's anything in the world that you can do about it, it's not OK.
Ms. Wilt: (Voiceover) Why is it not OK for my daughter to have Down syndrome? Why? Why is it not OK for Emily to have Down syndrome?
Emily: I can do it.
Ms. Wilt: Sure you can.
(Footage of Emily)
Moriarty: (Voiceover) Not all parents...
Ms. Wilt: I don't think you need help.
(Footage of Emily)
Moriarty: (Voiceover) ...of children with Down syndrome are impressed with Dixie Tafoya's theories...
Ms. Wilt: Down syndrome is not a terminal illness. It's just Emily.
(Footage of Wilt)
Moriarty: (Voiceover) ...nor are they willing to chance an untested treatment on their children.
Ms. Urso: I don't think it's safe. I myself wouldn't use a drug that has never been tested. It's very scary to me that these people are doing this to their child.
(Footage of children at play)
Moriarty: (Voiceover) Cindy Urso's child, Ashley, is six.
Ms. Urso: Come on, Ash. I love my daughter the way she is. I wouldn't change her for anything in the world -- no money in the world, nothing.
Ms. Janice Nelson: There is no cure. There will probably never be a cure in my lifetime or his.
(Footage of Gary)
Moriarty: (Voiceover) Janice Nelson is the mother of 11-year-old Gary.
Gary: I bounce it.
Ms. Nelson: I don't believe they need to be cured. They're just perfectly fine the way they are.
Ms. Wilt: It's not good enough for her to -- to push her vitamin therapy on me by saying, "You -- you may regret it in 20 years."
(Footage of Emily)
Moriarty: (Voiceover) Mary Wilt's daughter, Emily, is seven.
Ms. Wilt: That's not proof. That's not a reason. That's nothing.
(Footage of Wilt, Urso, Nelson with Moriarty)
Moriarty: (Voiceover) These mothers from all over the country sat down together one afternoon to explain why they oppose what Dixie Tafoya is doing.
Ms. Wilt: I don't want to change Emily to fit into society. I want to change society. I want society to be more accepting, and that's what we do when we send our kids to regular schools, when we -- when we put our kids in recitals.
(Footage of Nelson)
Ms. Nelson: You know, people don't look at these kids and, like, go, "Oh," that they're out in the open. It's -- we're -- we're here and we're here to stay and it's going to be this way, so get used to us.
Moriarty: (Voiceover) But that's exactly the kind of talk that sets Dixie off.
(Footage of seminar)
Ms. Tafoya: Wake up, folks. Your child is your child. That extra chromosome is not part of your child. It's a disease.
Moriarty: (Voiceover) Dixie is highly critical of parents who don't believe the way she does...
Ms. Tafoya: I find it incredible that something as simple as giving a multivitamin...
Moriarty: (Voiceover) ...that Down syndrome is a disease that should be treated with nutritional supplements and the drug called piracetam.
(Footage of Moriarty with Tafoya)
Moriarty: You have said that parents who don't give their kids these kind of nutritional supplements are not just making a mistake, but actually failing their kids.
Ms. Tafoya: In my personal belief, yes, I do believe they're failing their children.
(Footage of Nelson, Urso and Wilt)
Ms. Nelson: That's insane.
Ms. Urso: That's absolutely ridiculous.
Ms. Nelson: They are -- are trying to manipulate very vulnerable, first-time, early mothers that -- you know, first time with a Down syndrome child, that where you're at that point where you will almost do anything to undo what has just happened. And she is targeting these very, very vulnerable people right at their -- their -- the height of their vulnerability. I think that is wrong.
Moriarty: (Voiceover) They're not the only ones questioning Dixie's program.
(Footage of Dr. Ira Lott)
Dr. Ira Lott: In order to recommend something, you have to be convinced of its safety and efficacy, and we are not yet convinced of those parameters.
Moriarty: (Voiceover) Dr. Ira Lott is a board member of the National Down Syndrome Society.
Moriarty (to Lott): Is she putting out bad information?
Dr. Lott: Yes, ma'am. She's inaccurate.
(Footage of Lott with Moriarty)
Moriarty: (Voiceover) Down syndrome is not a disease, says Dr. Lott, but a genetic condition that can't be altered by drugs or treatments.
Dr. Lott: The brain of a child with Down syndrome is not normal at birth. This is the brain from a very young infant. And the back part of the brain, which comprises what is called the cerebellum, is much smaller in a person with Down syndrome than in the normal population.
(Footage of pills; footage of child swinging)
Moriarty: (Voiceover) And while nutritional supplements may make a child healthier, they can't change one certainty all parents must face.
Dr. Lott: There is a developmental disability in virtually every child with Down syndrome. In some children it is mils, and is some it's more severe.
Moriarty: But a lot of parents could say, I mean, "What harm could there be in giving these children nutritional supplements?"
Dr. Lott: We think often that a certain substance may be safe. For example, thalidomide was a drug that was considered to be effective and safe. But only when it was used in tens of thousands of people was it clear it became associated with terrible birth defects.
(Footage of Tafoya)
Ms. Tafoya: I want my child to have a totally complete life.
(Footage of Dr. Lawrence Leichtman)
Moriarty: (Voiceover) So far no parent has reported serious side effects from either Nutrivene-D or the drug piracetam. In fact, this doctor has seen only positive effects.
Dr. Lawrence Leichtman: The most startling differences I've seen with children are differences in -- in the incidence of ear infections. They grow better. I also noticed that the muscle tone shows improvement.
(Footage of Leichtman with Moriarty)
Moriarty: (Voiceover) Dr. Lawrence Leichtman, who once had nothing to give his patients with Down syndrome, not treats 160 of them with Nutrivene-D and piracetam.
Dr. Leichtman: No, there's no question in my mind at all. There's definitely a difference.
Moriarty: A significant difference?
Dr. Leichtman: Yes, a significant difference.
(Footage of Moriarty with Madison)
Moriarty: (Voiceover) But not as much of a difference as Dixie claims.
Moriarty: (to Tafoya) And when I look at the "after" picture, though, she still looks like a child with Down syndrome.
Ms. Tafoya: Oh, of course.
(Close-up of photos of Madison)
Moriarty: (Voiceover) Remember the "before" and "after" picturesof her daughter Madison that Dixie posts on the Internet? She says her child is not only healthier...
Ms. Tafoya: (to Madison) You going to show me how to play?
(Footage of Madison)
Moriarty: (Voiceover) ...but actually operating on thesame level as other children her own age.
Ms. Tafoya: She's seven years old but she can operate a computer that most seven-year-olds who are not mentally retarded cannot.
Moriarty: (to Madison) OK, what do you do now?
(Footage of Madison using computer)
Ms. Tafoya: (Voiceover) And she understands how the system works.
Moriarty: (Voiceover) And that's not all.
Ms. Tafoya: Her cognitive abilities and her intellect are as a child without Down syndrome right now.
(Footage of Madison and Moriarty playing ball)
Moriarty: (Voiceover) But in reality...
Moriarty: (to Madison) Are you ready, Madison? Are you ready?
Madison: Uh-huh.
(Footage of Madison swinging bat)
Moriarty: (Voiceover) After four years on Nutrivene-D and piracetam...
Moriarty: (to Madison) Almost.
Moriarty: (Voiceover) ...Madison is still severely speech-delayed.
Madison: Out. Out.
Moriarty: (Voiceover) Even one of Madison's biggest fans, Dr. Leichtman, admits Dixie may be overstating her daughter's progress.
(Footage of Moriarty with Leichtman)
Moriarty: Could you say she's just like a child without Down syndrome?
Dr. Leichtman: No. She still has Down syndrome. She always will.
(Footage of Moriarty with Tafoya)
Moriarty: Do you overstate the results of these products sometimes?
Ms. Tafoya: No.
Moriarty: Never?
Ms. Tafoya: No, I don't think so.
Moriarty: Madison's been on Piracetam continuously since she was only three years old.
(Footage of people at seminars and handouts)
Moriarty: (Voiceover) But what about the handouts distributed at Dixie's seminars that proclaim that, quote, "Today Madison is like a normal child."
(Footage of Moriarty with Tafoya)
Moriarty: Is that a fair statement? Is Madison...
Ms. Tafoya: No.
Moriarty: ...just like a normal child?
Ms. Tafoya: No. No, it's not a fair statement. As -- as far as the materials and things that are prepared at conferences and handed out, I don't prepare it. I don't see it.
Moriarty: But you knew this was out.
Ms. Tafoya: Oh, of course; not before it was printed.
Moriarty: But you haven't stopped this from going out.
Ms. Tafoya (smiling): How can I stop it?
(Footage of Tafoya with Madison)
Moriarty: (Voiceover) But overstating results doesn't mean Dixie's therapy isn't doing Madison and a lot of children a lot of good.
Dr. Leichtman: They'll function higher, they'll function better and they'll maximize what they have.
(Footage of Moriarty, Wilt and Nelson)
Moriarty: What if she's right? What if, when this is ultimately tested, piracetam and these vitamin therapies really do improve the cognitive abilities of children with Down syndrome and their health?
Ms. Wilt: I'll still have Emily and she'll still be who she is, and I can't see that I would have harmed her in any way.
Ms. Nelson: I've given my son everything that I could possibly give him. And I believe that his life will be a wonderful life. If I don't believe that, you know, you can go crazy.
(Footage of Nelson)
Moriarty: (Voiceover) When we come back...
Ms. Wilt: Where are those children? Where are those children that are now testing in the normal range? Where are they, Erin?
(Footage of Wilt; Kiki Ruiz)
Moriarty: (Voiceover) You're about to meet one...
Kiki Ruiz: Pleasure to meet you.
(Footage of Kiki; Jake)
Moriarty: (Voiceover) ....and to see how baby Jake...
(Footage of Baby Jake)
Ms. Shabet: So far he's done really well.
Moriarty (Voiceover) doing on the therapy.
Mr. Shabet: Jake's the man.
(Footage of Chris Burke)
Moriarty: (Voiceover) But first, a look at a rising star.
Mr. Chris Burke (Actor): I was born different. It doesn't mean anything that I have a disability.

(Commercial Break)


Unidentified Photographer: Ok, leave it right there.
Unidentified Child: Here.
Lily Woodward: Thank you.
Ms. Terri Woodward: Lily is just one of a kind.
(Footage of Lily with photographer)
Moriarty: (Voiceover) Lily Woodward is living a little girl's fantasy.
Ms. Woodward: Very loving and outgoing.
Moriarty: Does she like to model?
Ms. Woodward: She loves it.   There's my girl. Getting ready to have your pictures taken?
Lily: Yeah.
Ms. Woodward: OK.
Moriarty: (Voiceover) Lily is a child model...
Ms. Woodward: Oh, what a glamour girl.
(Footage of children)
Moriarty: (Voiceover) ...appearing in ads with children who don't have Down syndrome.
Photographer: Go ahead, do it. Do it. Do it quick. Everybody, big smile.
Moriarty: (Voiceover) But Lily is not this bright and lively because of a drug.
Ms. Woodward: I'm so proud of you, honey. Yes.
(Footage of Lily with Dr. George Capone)
Dr. George Capone: How old are you, Lily?
Lily: Four.
Dr. Capone: Yeah. You're four. You're getting to be such a big girl.
Moriarty: (Voiceover) While Lily is taking nutritional supplements...
Ms. Woodward: (to Lily) Who's that?
Lily: Dalmatian.
Ms. Woodward: Dalmatian.
Moriarty: (Voiceover) ...she is not on piracetam...
Dr. Capone: Lily, show me Barney.
Moriarty: (Voiceover) ...the controversial unapproved drug that Dixie Tafoya says can help a child think more clearly.
Dr. Capone: Which one is Mufasa, the lion? That's Mufasa.
Moriarty: (Voiceover) Dr. George Capone is Lily's doctor and the director of the Kennedy Krieger Institute's Down syndrome clinic in Baltimore.
Dr. Capone: What noise does Mufasa make?
Lily: (Roars)
Dr. Capone: Yeah. (Roars)
Moriarty: (Voiceover) He says it's impossible to tell whether even the nutritional supplements have made a significant difference.
Dr. Capone: That's a girl.
(Footage of Moriarty with Capone)
Moriarty: So would you describe Lily as the upper level of children her age with Down syndrome?
Dr. Capone: I -- I think that's fair to say. Yeah.
Moriarty: And that's without the use of piracetam.
Dr. Capone: Correct.
Moriarty: What does that say?
Dr. Capone: It confirms something that we've know actually for a long time; that there's a lot of variability from individual to individual with Down syndrome.
(Footage of Lily with parents)
Moriarty: (Voiceover) In fact, Lily's own parents, Ted and Terry Woodward...
Mr. Ted Woodward: There you go, baby girl.
(Footage of Lily with parents)
Moriarty: (Voiceover) ...think her progress has less to do with what she's taking...
Lily: Ooh, it's ready.
(Footage of Lily playing)
Moriarty: (Voiceover) ...and more to do with how she's treated: like any other girl.
Ms. Woodward: As parents, that's what we want is inclusion to really -- to really be a part of this society.
Ms. Woodward: (Voiceover) She's doing what -- what she would do if she didn't have a disability. And she's out there with everybody else.
(Footage of Chris Burke)
Moriarty: (Voiceover) And that may also explain the success of this young man.
Mr. Chris Burke (Actor): I just told them, you know, that I would be on the set. That's all.
Unidentified Man: You got it.
Moriarty: (Voiceover) If he looks a little familiar, that's because Chris Burke is an actor.
Mr. C. Burke: Well, here's looking at you, kid.
Moriarty: (Voiceover) known for his past role in the TV drama "Life Goes On."
Unidentified Man: You see your buddy, Bill?
Mr. C. Burke: All right, man.
Mr. Bill Smitrovich (Actor): " 'Life Goes On,' life goes off."
Mr. C. Burke: Life goes off.
(Footage of rehearsal)
Moriarty: (Voiceover) Today...
Unidentified Man: One more rehearsal, please.  Is Chris going to be here or there?
Moriarty: (Voiceover) ...he's shooting a scene for the season premiere of the current TV hit "Touched by an Angel."
Mr. C. Burke: I was born different. Doesn't mean anything that I have a disability.
(Footage of old photos of Burke)
Moriarty: (Voiceover) Chris began life like most kids with Down syndrome, with little hope.
(Footage of Moriarty with Frank and Marian Burke)
Moriarty: Do you remember that moment when the doctor...
Mrs. Marian Burke: Oh...
Moriarty: ...came in?
Mrs. Burke: I'll never forget it.
Mr. Frank Burke: They came in and just bluntly told my wife that she had a Mongoloid.
(Old photo of Chris)
Mr. F. Burke: They didn't give us much hope on what he could do, which amazes me when they look at a little baby and tell you what they're not going to do in the future.
(Footage of Burke family)
Moriarty: (Voiceover) But Marian and Frank Burke, Chris' parents, had other ideas.
Mr. C. Burke: See, Mom had a saying, OK? 'My son is -- is determined, not stubborn.
Mr. F. Burke: That's an unbiased opinion.
Mr. C. Burke: That's right, unbiased.
Moriarty: (Voiceover) Still, even they had doubts about Chris' dream of becoming an actor.
(Footage of Chris)
Mrs. Burke: (Voiceover) We really never thought there was any room for him in the television industry, to be perfectly honest and we didn't discourage him, be we certainly didn't encourage him to follow his dream to become an actor.
...with a successful career.
Moriarty : Have you ever said to yourself, 'I wish the doctors who first delivered him could see him now?'
(Footage of Chris with his parents)
Mr. F. Burke: (Voiceover) Oh, many times. Many times. And the also said he'd plateau.  And I don't think he's plateaued yet. And some of the doctors that gave us that dismal prediction, sad to say, they've plateaued.
(Close-up of book cover for "A Special Kind of Hero")
Moriarty: (Voiceover) Chris is not just an actor. He's an author....
Mr. C. Burke: This is my book, "A Special Kind of Hero."
(Footage of Chris with students)
Moriarty: (Voiceover) ...and as a spokesman for the National Down Syndrome Society, he gives schoolchildren a new look at Down syndrome.
Unidentified Man: Can you all say hi to Chris?
Students: (in unison) Hi!
(Footage of Chris; Tafoya at seminar)
Moriarty: (Voiceover) What's Chris' secret? Dixie Tafoya would have you believe that Chris is living proof of the potency of treatment programs like the one she's promoting.
Ms. Tafoya: And another myth about Chris Burke is that he's had no treatment. That's B.S. Chris Burke has been on a nutritional protocol most of his life.
Moriarty: (Voiceover) But that's not what his parents say.
(Footage of Moriarty with Frank and Marian Burke)
Moriarty: There are going to be some people watching this, wondering, 'What did you do differently than other parents with kids with Down syndrome?'
Mrs. Burke: We loved Chris. We treated him normally. We made sure he learned the right thing.
Moriarty: Did you give him anything special when he was growing up?
Mrs. Burke: We made sure Chris ate properly.
(Footage of Burke family)
Moriarty: (Voiceover) Including a daily vitamin, the same everyday vitamin they gave his brother and sisters who don't have Down syndrome. As for giving Chris piracetam, the Burkes say they're not interested.
Mrs. Burke: It has to be safe. How do they know it's safe yet? Do they?
(Footage of Chris accepting award; Lily Woodward)
Moriarty: (Voiceover) In a world where children are often written off as hopelessly disabled, maybe Chris Burke and Lily Woodward are simply exceptions to the rule, or maybe they're proof that a parent's love is the best medicine of all.
(Footage of Moriarty with Frank and Marian Burke)
Moriarty: You say you're not fighters, but do you feel a little like pioneers?
Mrs. Burke: Well...
Mr. C. Burke: Yes.
Mrs. Burke: we do. Now we do.
Mr. C. Burke: For me, yes.
Mrs. Burke: You feel like a pioneer, darling.
Mr. C. Burke: I mean, you're not -- no, I mean...
Mr. F. Burke: "Little House on the Prairie."
Mr. C. Burke: No, no, no. That's not what I'm saying. My parents are really truly pioneers. I love them very much. And they gave me my life. I think that's important.
Mrs. Burke: I think he's given the world quite a bit, and we're very proud of him for that.
(Footage of Kiki with Kim)
Moriarty: (Voiceover) Coming up...
Ms. Ruiz: When kids have more energy, something has to be right.
Moriarty: (Voiceover) For this mom, the proof is in the pool.
Ms. Ruiz: (Voiceover) This kid is participating fully in life.
(Footage of Shabets; Jake)
Ms. Shabet: He's gotten a lot better, I think.
Moriarty: (Voiceover) For them, it's in the crib.
Ms. Shabet: He seems a lot more alert an interested in his surroundings.
Moriarty: (Voiceover) Taking chances...
(Footage of Madison)
Ms. Tafoya: She gets a heaping teaspoon three times a day.
(Footage of Jake)
Moriarty: (Voiceover) ...on an untested treatment.

(Commercial Break)


(Footage of children playing; Madison; Tafoya and Madison with Moriarty; photo of Madison; Madison hitting balls with bat, on swing with Moriarty)
Ms Tafoya: (Voiceover) I had a child who zoned out all the time. It's a very frightening thing to see your baby wasting away and just in another world.
Moriarty: (Voiceover) In just four years...
Ms. Tafoya: She was sick all the time.
Moriarty: (Voiceover) Dixie Tafoya's daughter Madison went from this...
Ms. Tafoya: (Voiceover) No way she could run, play. Very miserable.
Moriarty: (Voiceover) this.
Ms. Tafoya: To know what she was like then and to see her now, I would never have believed it.
(Footage of Tafoya dispensing Nutrivene-D; Madison)
Ms. Tafoya: (Voiceover) It's Nutrivene. She gets a heaping teaspoon three times a day.
Moriarty: (Voiceover) Madison has been taking piracetam and Nutrivene-D for four years.
Ms. Tafoya: I give her what I give her to keep her healthy. I want her to enjoy life.
Moriarty: (Voiceover) Dixie believes all parents of children with Down syndrome should use it.
Ms. Tafoya: The parents who are opposed are first uneducated.
Moriarty: (Voiceover) And if progress with her own daughter doesn't convince them...
(Footage of Kiki and Kim Ruiz)
Ms. Ruiz: Lookit, Kiki. What is it?
Kiki: An egg.
Moriarty: (Voiceover) ...maybe Kiki Ruiz would.
Ms. Ruiz: What do you think came out of it?
Kiki: Two babies.
Ms. Ruiz: (Voiceover) My child was sick  If you're sick, you can't learn, you're not happy.
Moriarty: (Voiceover) It didn't take long to make her mother, Kim, a believer.
Ms. Ruiz:(Voiceover) On Friday she couldn't jump rope. We saw Dixie Saturday, we started piracetam on Sunday. Monday she could jump rope.
Moriarty: (Voiceover) Just a coincidence?
Ms. Ruiz: (Voiceover) It was remarkable.
Moriarty: (Voiceover) Not according to her mom.
Ms. Ruiz: Suddenly all these st -- things suddenly started exploding.
Unidentified Child: What time is it there?
Kiki: Five o'clock.
(Footage of Kiki taking piracetam)
Moriarty: (Voiceover) Kiki is eight years old
Ms. Ruiz: Kiki, going to take your piracetam OK?
Moriarty: (Voiceover) She's been taking Dixie's treatment since she was six.
Ms. Ruiz: Gave it to her and the kid changed.
Kiki: (Reading) 'No one has lost a mitten. I will make up...'
(Footage of Kiki reading)
Ms. Ruiz: (Voiceover) She knew her ABCs and 10 sight words before we started the piracetam. And within a month after the piracetam, she was reading Dr. Seuss. She finished first grade, so she can read at her level.
Kiki: 'Give Jane a big hand'
Moriarty: When he says, 'Give Jane a big hand,' what does that means? Do you know?
Kiki: Clap...
Moriarty:What is it?
Kiki: Clap your hands.
Moriarty: Clap your hands?
Moriarty: Absolutely.
Ms. Ruiz: (Voiceover) Her attention span doubled. She went from doing a half-day at school, within a week, to doing a full day.
Ms. Nancy Press (Occupational Therapist): What do you want to do with me right now?
Kiki: Play with dolls.
(Footage of Kiki with Press; Kiki; Press)
Moriarty: (Voiceover) Kiki is an exceptional child.
Ms. Press: And what's her name?
Kiki: Her name is Nancy.
Moriarty: (Voiceover) But Kiki was exceptional before she began treatment.
Ms. Press: She reached all her developmental milestones and was functioning at age level at two years of age.
Moriarty: (Voiceover) Occupational therapist Nancy Press has known her since birth.
Moriarty: (to Press) Well, that's unusual then.
Ms. Press: That's very unusual. She was functioning at age level. I've never seen that before.
Ms. Ruiz: Come on.
(Footage of Kiki with Ms. Ruiz)
Moriarty: (Voiceover) So would Kiki have developed this well without the treatment?
Ms. Ruiz: (Voiceover) Kiki was doing OK. She's just better.
Moriarty: (Voiceover) Her mom is convinced Dixie's therapy is the difference.
Ms. Ruiz: (Voiceover) Something has to be right. When kids have more energy, when kids are not sick as much, something has to be right.
(Footage of mobile above Jake Shabet's bed; Jake; Jake with parents, Alex and Christina)
Ms. Shabet: (Voiceover) Our plain goal is to try and keep him healthy.
Moriarty: (Voiceover) And then there's three-month-old Jake Shabet.
Mr. Shabet: Jake's the man.
Ms. Shabet: He's a good kid.
Moriarty: (Voiceover) When we last saw him...
Mr. Shabet: OK, Bud.
Moriarty: (Voiceover) just two days old...
Ms. Shabet: You need a third of a teaspoon.
Mr. Shabet: Teaspoon or tablespoon?
(Footage of Alex and Christina preparing Nutrivene-D supplement; Alex feeding Jake)
Moriarty: (Voiceover) ...his parents, Christina and Alex...
Mr. Shabet: Plus how much?
Moriarty: (Voiceover) ...were grappling with giving him Nutrivene-D and piracetam for the first time.
Mr. Shabet: Oh, it's real easy now.
Ms. Shabet: Yeah. He's gotten a lot better now.
Mr. Shabet: It's a lot easier.
Moriarty: (Voiceover) Unlike most parents, the Shabets have been able to test Dixie's treatment.
Ms. Shabet: It was an interesting little...
Mr. Shabet: Very.
Ms. Shabet: ...unintentional experiment.
(Footage of Jake; medication bottles; Jake)
Moriarty: (Voiceover) When Jake had feeding problems, they were forced to stop giving him Nutrivene-D and piracetam.
Mr. Shabet: You know, when we weren't on the piracetam, he was screaming, then he'd just go to sleep, and he was asleep a lot during the day.
Ms. Shabet: Before, he would cry all the time when he was awake.
Moriarty: (Voiceover) And how is Jake now after being back on the treatment for five weeks?
Ms. Shabet: We pretty much noticed an immediate difference in his -- I want to say personality, but...
Mr. Shabet: Yeah. I would say so.
Ms. Shabet: ...he was just awake more.
Mr. Shabet: He -- about a week after we started, he started smiling.
Ms. Shabet: He stopped crying all the time when he was awake. He seemed a lot more alert and interested in his surroundings. Everytime it seems like he's off or it, he's one way, but anytime he gets put right back on it, he acts another way.
Moriarty: (Voiceover) What do you think the reason for that was?
Ms. Shabet: Well, I mean, we're assuming it's tied to the vitamins and the piracetam because -- I mean, either that or it's just an extreme coincidence.
(Footage of Nutrivene-D bottle; Dr. Lawrence Leichtman)
Moriarty: (Voiceover) There is no way of knowing for sure until both Nutrivene-D and piracetam are tested.
Dr. Leichtman: (Voiceover) That's true. It's not been adequately tested and it needs to be.
Moriarty: (Voiceover) Dr. Lawrence Leichtman prescribes this treatment for his patients.
Dr. Leichtman: It's very frustrating. I'd love to see adequate studies done.
(Footage of Dr. Ira Lott)
Moriarty: Why haven't there been tests on nutritional supplements and piracetam?
Dr. Lott: These are very big and expensive studies.
Moriarty: (Voiceover) Dr. Ira Lott of the National Down Syndrome Society.
Dr. Lott: The medical profession has not paid enough attention to studying these alternative therapies.
(Footage of computer screen; Moriarty watching Tafoya use computer; computer screen)
Moriarty: (Voiceover) It took a mother on the Internet...
Ms. Tafoya: Sometimes you have to drag someone kicking and screaming into the next generation...
Moriarty: (Voiceover) get their attention.
Ms. Tafoya: Every disease that's ever been conquered, every step that mankind has ever made has been made because someone hoped for something.
(Footage of Tafoya with children)
Moriarty: (Voiceover) This woman without even a college degree has made a difference in an area of medicine.
Dr. Lott: I think she's called attention to an issue that is much more widespread than we previously realized.
(Footage of National Down Syndrome Society logo; document authorizing research grant)
Moriarty: (Voiceover) Just last month the National Down Syndrome Society announced a $3 million research grant that will include studies on nutritional supplements and piracetam.
(Footage of capsules; Kiki)
Ms. Ruiz: Kiki, going to take your piracetam, OK?
Moriarty: (Voiceover) But many parents aren't willing to wait for the medical community to decide it's safe and effective.
Ms. Ruiz: (to Moriarty) This year she has had what I consider the best year of her life.  (to Kiki) You ready?
Kiki: Yeah. Go.
(Footage of Kiki swimming)
Ms. Ruiz: (Voiceover) This kid is so happy. This kid is participating fully in life.
(Footage of Kiki and Ms. Ruiz)
Ms. Ruiz: Very good. You kept your arms nice and straight.
Kiki: Yeah.
Ms. Ruiz: In and out.  (Voiceover) She was swimming the other day and she said, you know, 'I did it! I did it!' She was never so thrilled with herself.
Ms. Ruiz: You did a good job.
(Footage of Kiki; children)
Ms. Ruiz: (Voiceover) It's so much better. I would not take her off it.
Kiki: Hi.
Unidentified Man: Hi.
Kiki: Nice to meet you.
Man: Nice to meet you.
Moriarty: The company that makes piracetam, UCB Pharm, says parents of children with disabilities are sometimes desperate for help, but there's no current study that could lead to FDA approval of the drug to treat Down syndrome. One other note: In the early 1900s, babies born with Down syndrome had a life expectancy of just nine years. But today, as a result of medical advances, up to 80 percent of people with Down syndrome live to be at least 55.




ERIN MORIARTY (From the CBS website):
CBS News Correspondent, 48 HOURS

Erin Moriarty was named a correspondent for 48 HOURS in June 1990. She had previously been the consumer correspondent for "CBS This Morning" and the CBS EVENING NEWS WITH DAN RATHER.

Drawing on her training as a lawyer, Moriarty has delved into some of the most important social and legal issues of our day, such as teen-agers facing the death penalty, the abortion controversy, the nation's drug and alcohol abuse problem, the battered woman's syndrome and the battle to save premature babies. She was also the sole correspondent for 48 HOURS: "Testimony of Terror," a report more than a year in the making, which followed the case of a California girl who knew the identity of a killer but was terrified to come forward and reveal what she knew.

Moriarty has received numerous honors for her reporting, including six national Emmy Awards for her work on 48 HOURS.  In 1988, she received the Outstanding Consumer Media Service Award presented by the Consumer Federation of America for her "outstanding work at CBS News" and "her many contributions of both local and national significance as a consumer reporter."

Prior to joining CBS News in 1986, Moriarty was an award-winning consumer reporter for WMAQ-TV Chicago (January 1983-January 1986). She was also a reporter in Columbus, Ohio; Baltimore and Cleveland.  She was graduated Phi Beta Kappa in 1974 from Ohio State University with a degree in behavioral sciences. She received a law degree from Ohio State University in 1977 and is licensed to practice law in Ohio, Washington, D.C. and Maryland.


Related links on my website:
Amino acids and DS
Vitamins and minerals and DS
Piracetam research
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